Tuesday, November 13, 2012

You Are Your Best Advocate

Last evening, I had the opportunity to give a speech at the Eczema Society of Canada's (ESC) Information Session in Toronto. The turnout was great and I was on a panel with the father of an infant with eczema, a dermatology nurse and a paediatric dermatologist. It was a great mix and represented a lot of different perspectives, from the clinic, to the patient with eczema, to the parent of a child with eczema.

It sounds cheesy to say it, but I was honoured to be asked and the experience of talking with people afterwards was amazing. I was in a group where everyone "got it". I will admit I got a bit teary, because I discussed a very difficult period of my life that I've never discussed outside of my family or very select friends. I questioned my choice of topic until the last minute, but as I gave the talk and I saw people nodding while they listened to my experiences, I knew it was the right one. The feedback I received after the event was amazing and I thank everyone who took a couple of minutes to come and say hi, tell me about their personal experiences or ask about my blog.

So, here in a slightly modified form is the talk I gave last night:

I wrote a few different speeches with entirely different topics before I finally got to this version. I wrote one about what my day looks like. Practical, but boring. I also wrote one on the importance of government advocacy in the eczema community. That one was pretty hard to throw away, but a little too involved; so, I'm going to recycle it for my blog.

I finally came to this draft after working on getting some social media exposure for this event and after attending the Canadian Skin Patient Alliance conference in October. I volunteered at the Eczema Society booth during the weekend and it was amazing how many different stories I heard. Some people viewed eczema as a nuisance condition and compared to skin conditions that can be life-threatening, like skin cancer, I can see why they’d say that. One person told me that she’d always thought it was something she had to just deal with, but coming to the conference made her realize that she was ready to do something about her eczema and take control of it. I also heard stories about children who wanted to handle their own skin care routines and about teenagers who were sick of dealing with it. I understand all of that.

In my mid-20s, I had an extremely severe eczema flare-up. It was literally disabling. I was taking large doses of Benadryl throughout the day and night. I couldn’t sleep, let alone work. I was unable to wear anything but the softest cotton clothes, and sometimes even that was too irritating. I didn’t see any of my friends for almost a year. The only contact I had outside of my immediate family and doctors was through email or phone.  I was depressed and began seeing a psychiatrist again, recognizing that I needed help to cope. I refused to leave the house except to see my doctors who said that I just had eczema and there was nothing more they could do. But, I refused to accept this. I knew what my normal skin looked and felt like and that wasn’t even close. After begging  one of my doctors to admit me to hospital, he decided on a much stronger course of action than anyone had been willing to pursue. Within a few months, my skin was back to “normal” – my normal.

That period of my life was difficult and I do everything possible to make sure that it never happens again. I am vigilant about my skin health. I am and will always be my best advocate. If I don’t feel a doctor understands what I need from them, I explain and if they can't or won't understand, I find another one. If I don’t agree with or understand a recommended treatment, I ask questions and express my concerns. If a medication doesn’t work, I say so and try another one. My doctors are only part of my health care regimen.

I make decisions based on scientific evidence; so, while I don’t settle for less than I deserve, I’m also realistic and know that eczema is something that I will always have. For that reason, it's so important that I advocate for my health. It's my job to make sure that I work with my doctors and let them know what's going on in my health. It's my job to ask questions when I don't understand. It's my job to make sure that I follow instructions properly and stick to my regimen. No matter what happens with my eczema, ultimately, my health begins and ends with me.

*NB While I am a support volunteer for ESC, I am in no way endorsed or supported by ESC. My views and opinions are my own.

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